Heat Is Not Our Friend | June 26, 2016

Like the time I was gardening at high noon. (What was I thinking about?) I fell backwards, hitting my head on the walkway. And I couldn’t ask for help because I was out cold. Baking in the sun.

And I’m sure you have your own stories. About passing out, puking or just feeling like you’re as dizzy as if you were on a roller coaster ride.

An epileptologist explained that heat can trigger a seizure for some people because it’s firing up the neurons in the brain which can cause a seizure.

Some examples:

Heat Exhaustion (“Heat Stroke”)

Heat exhaustion, commonly known as heat stroke, is a condition caused by the body’s inability to keep itself cool.

The body stays cool by perspiring (sweating), as the perspiration evaporates.

On days that are especially hot and humid, extra moisture in the air causes perspiration to evaporate more slowly, causing your body temperature to rise.

If left untreated, heat stroke can cause different symptoms.

Symptoms of Heat Stroke

The early symptoms of heat stroke are not terribly serious but should be considered a warning.

Earliest symptoms may include nausea and vomiting, fatigue and weakness, headaches, muscle cramps and dizziness.

As the condition worsens, you may experience not only seizures, but also high body temperature, the absence of sweating with very hot or flushed dry skin, a rapid pulse, difficulty breathing, odd behavior, confusion, hallucinations and disorientation.

And you could become comatose.

Hot Weather and Epilepsy

There is no scientific evidence that heat itself causes seizures to occur in people suffering from epilepsy.

Becoming severely overheated can cause seizures, but an average hot day is not in itself the culprit.

It’s mainly changes in weather that trigger epileptic seizures.

For example, someone who keeps his house very cool in the summer may go out into the hot weather, and the change in temperature may trigger seizure activity.

Summertime mean thunderstorms, and the lightning produced during such storms can also be a trigger.

Going from a dark room into the bright sunshine can cause seizures, too.

Dehydration and Epilepsy

Make sure you have plenty of fluids in your system if you have epilepsy.

Too much perspiration and not enough fluid intake can cause a drop in sodium and sugar levels (hypoglycemia), both of which have been known to cause seizures.

Also, sweating or urinating too much may cause too much of your seizure medication to be expelled from your body, lowering both your therapeutic medication levels and your threshold for seizures.

Anti-Seizure Medication Side-Effects

Certain anti-seizure medications, such as the drug Topamax, may cause side-effects that require more fluid intake.

For example, Topamax may cause decreased sweating and higher body temperature, which can prevent your body from cooling itself adequately.

Normally, the process of sweating and evaporation of sweat facilitates body cooling.

In extreme temperatures in excess of 90° F (32.2° C), the amount of heat produced, exceeds the cooling effect of sweat evaporation.

Likewise, if the humidity reaches 100%, evaporation of sweat is no longer possible, and your body loses its ability to dissipate heat.

I normally have seizures where I just stare and have no awareness and it lasts 3-5 minutes, but one day I had a seizure where I fell to the ground. It was real hot that day, so that’s what I attributed it to, so thanks, because I never want to have that again. After I was alright. A policeman asked if I was alright, because the people who witnessed it were concerned. Thank God they were nice.

Wearing sunscreen is a whole separate issue from heat related illnesses. Not sure why you included it here. Keeping out the UVs does not keep out the heat. Also some sunscreens can interfere with your body’s ability to cool itself through sweat by gunking up your pores. There is also the issue of vitamin D or lack thereof which tends to be greater in people with epilepsy.

Sorry if I’m picking a nit here Phyllis. Otherwise a very informative article. I just didn’t want to see caution about excessive heat turning into sunshine phobia.

Living here in Hawaii, I don’t have much choice about being in a warm place but I find that fans are the answer instead of AC. Your point about going from a chilly AC-ed building out into a seriously hot day is a good one. Using fans helps reduce the heat index without making too much of a shock as you transition in and out.

I own my landscaping business I love warm weather. The key as you say is to be hydrated and adjust to the 90 degree weather. A lot of people who work with me in the gardens have more issues than I do. They are similar. Stay in shape all year.

Hmm, i love the summer heat. Best time of the year for me. I’ve been known to sun tan in 100+ degrees weather and i just love it. 🙂 Weird, I know. It’s ok if you understand that you need to work up to that type of sun tanning. If you have never tanned before, it’s not wise to do it for long when starting out. But i’ve never had a seizure because of the heat, knock on wood.

I love summer! But the heat and humidity is awful were I live. The bright sun bothers my eyes. I get more migraines and seizures. Heat is a big trigger. I spend a lot of time inside. Need to stay hydrated.

I just got finished reading several posts about people and their experiences with Keppra, SSI, and doctors on a different page here. There are so many infuriating and debilitating aspects for people who are hit with such an exponential double whammy as epilepsy, between the disorder itself, then dealing with the people and bureaucracies who control their lives. I would like to share my daughter’s story. We’ve resolved her red tape for now, but I’m expecting more in the near future. I’m curious if anyone is familiar with the kind of epilepsy my daughter has. Her form of epilepsy was independently given by both her neurologist and the neuropsychologist at a major teaching university in Los Angeles, and her test report is not available at the moment.

Amy, now almost 27, has a rare form of epilepsy that, unbeknownst to us, she’s had from birth (and perhaps in utero). But, except for several visible focal and petit mal seizures she had (and seemingly outgrew on medication) as a toddler she appeared to be symptom free until age 16. At 4 years, her father and I separated and for many years she suffered because of it. Suffice it to say that on top of all her neurodevelopmental issues, she also had severe clinical depression. She was always– fill in the blank with your choice of physical symptoms–getting her out of many circumstances.

She was a VERY complicated daughter and sister. And even though I’m a child psychologist it only gets you so far (and that, friends, isn’t far). On the one hand, I didn’t know enough to be an expert, but on the other, more than enough to be a loud and tenacious advocate when need be. But what saved us was that my best friend and colleague WAS top experts in special needs and regularly took the tough cases. She knew her stuff.

So, about here you might be taking a refrigerator or bathroom break : )

Amy began having mild-ish developmental problems in infancy that just kept progressing: delayed development milestones, terrible behavior problems, adhd, ocd, tics, sensory integration issues, a social communication disorder, learning disabilities, processing problems… etc. By the time she was 8, I think we had them all. Despite having a history of seizures, only two doctors ever thought to do a repeat EEG, and after each of them there wasn’t any indication of seizures. But she jerked in her sleep a lot, and finally I video recorded her about around 16, which I would later show a neurologist.

Around that same time, she had been developing strange neurological symptoms- 23 to be exact- some of which might have been considered as “just Amy” with her chronic “I don’t feel well” complaints. Others were clearly neurological. I took her to a neurologist who examined her- the cursory in-office exam- and after reading her history he took me aside and said, “it’s all in her head”. I didn’t know whether to be offended, punch him, or feel relieved. Mostly, I felt so incredibly sad and angry for my daughter, who- at this point- felt like nobody ever believed her (including me sometimes). But he ordered a sleep study which they said wasn’t perfect, but looked okay… I was exhausted from the prior 16 years- 12 of them as a single mom with another child- and I dropped the ball.

I hope this isn’t off the charts self-indulgent, but it feels good to share this with others who can understand. I took her to other doctors, until she finally ended up at a major hospital in Los Angeles for a 10 day EEG study. At 20 years old she was finally diagnosed with epilepsy. The first medication they wanted to put her on was Kepra.

I came home and read story after story of how Kepra shattered so many lives. I’m sure that it has helped maybe just as many or more, and there are potential major side effects with any of these meds, but that one drug terrified me. She was medication-resistant, and we modified cocktail after cocktail, I could never give in. I felt there was absolutely no margin for the kind of error I read about.

At this point, while she isn’t a typical 27 year old, she looks nothing like she did as a child. But how great to know the underlying issue.

She finally had VNS surgery which helped with her epilepsy and her depression, and she is finally seizure-free. If this tenuous two-month period can turn into three she’ll get to drive again.

I told you about the man I write about in prison who has epilepsy. He was born seizing and they didn’t think he would live. He had brain surgery at 12 to try to stop some of the brain bleeds. It slowed the seizures down but didn’t stop them. I read this article because it was about the heat. He is in a Texas prison that has no AC and is often over 100 degrees for weeks on end. Every year people die of the heat.. One prison the moved him to ( 8 in all) they had him working in the field. They knew he had epilepsy. He would have seizures and would also pass out from the heat without a seizure. They pretty much laughed at him he tried to get moved to a different type of work. The lack of care for all inmates is so wrong. All chronic conditions from heart disease to diabetes doesn’t matter. They will just watch you die rather than take you to medical.

Thanks for the article it answered lots of questions I had. After tons of meds, three surgeries, etc. I now only have nocturnal seizures when taking two meds. I guess that’s pretty good in itself. We haven’t found any obvious trigger for any of them. I have always been a “chilly willy” with Raynaud’s syndrome causing me to be cold often. I usually sleep with covers on-not super heavy but always enough to keep me warm. One of the things that we are trialing is that I may be too warm when I sleep, thus causing seizures whenever the stars line up correctly(boo hiss). So I have been trying to sleep with light covers ie. 1-2 sheets and no warm covers. As far as outside heat it bothers me only like anyone else. I tried living down South but it was too hot and humid for me. I left because of the humidity basically not any seizures. Since I’ve been married we have always had a fan on in the bedroom and the ac on in the rest of the house. All of which is a little uncomfortable for me but the heat really bothers hubby. So, despite keeping the house cool I have continued having my seizures. I will be three months seizure free in three days. I have been seizure free for longer than that a couple of times which has been awesome! Plus I am in menopause right now so I have the dreaded “hot flashes”. Except for being uncomfortable occasionally that hasn’t seemed to have changed anything as far as my seizures. Is it possible that keeping my core more cool as I sleep is helping? Or does it seem like I’m just grasping at straws? Am I just looking for something to feel like I have control over? I certainly give up my covers if it really was the problem. But if it isn’t I would gladly take them back! I’m guessing that the only way to tell if this is correct is plain old anecdotal evidence along with the meds finally at the right level. Thanks for letting me chatter on. It is nice to have someone to talk to that “gets it”. Thank you and have a good seizure free day. Peace

Thanks, I sure hope so. Of course, the possibility of having a seizure will always be hanging over my head. But I am to the point where if it seems to be working I’m not going to rock the boat. Thank you for your support for all of us!

Summers temperatures high, never take cool drinks cool water is unfavorable.
Take only pot water or Luke warm water, exercise before sunrise or after sunsets or before one hour of sunsetting
Take only food according to season or which fits your health

Phylis Feiner Johnson, hypothermia and heatstroke are 2 things to take seriously. However, as long as it is not raining outside, cold weather does not give me a lot of grief. That could change as I get older, however, I am more inclined toward Winter weather over the Summer weather.

Phylis Feiner Johnson, as long as I am able to move around freely, even in the cold weather, I am very comfortable. The only places I probably would not want to be are the Arctic or Antarctic regions of the Earth. Other than that, cold weather does not cause me too much distress.

Weather causing problems? Definitely!!! People at work used to think I was crazy when I’d mention ‘there’s a storm coming within the next 3 days”…. after realizing I was right almost all the time, they started asking me,
“Well, what’s the weather going to do?” ‘Whether’ the weather is slight or severe, I always have problems.

I agree with your preference to cold rather than hot.
I always say, “yes, you can pile more and more blankets over yourself,but you can ‘only take off so much before you’re……………..” Yep! (always have to chuckle at myself when I say that………………..)

Oh yes, and forgot mentioning stress- sometimes
I have a terrible day- yes, when under any stress. Anger does it too. I’ve always been surprised how funerals don’t cause added spells but it would be terrible to wish for them.

Phylis Feiner Johnson, as a follow up, the only time cold weather causes me any issues is when my left foot (the foot that I fractured) starts to ache. So I will admit to a downside to cold weather for me. However, I have a reasonably high tolerance for it.

I've been a professional copywriter for over 35 years. I also had epilepsy for decades.
My mission is advocacy; to increase education, awareness and funding for epilepsy research.
Together, we can make a huge difference. If not changing the world, at least helping each other, with wisdom, compassion and sharing.